National Standards for Public Involvement in Research: missing the forest for the trees

Journal of Medical Ethics 44 (12):801-804 (2018)
Authors
Abstract
Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1136/medethics-2018-105088
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

Our Archive


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 35,954
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

No references found.

Add more references

Citations of this work BETA

No citations found.

Add more citations

Similar books and articles

Genomics and Public Involvement: Giving Justifications Their Due.Gabriele Badano - 2012 - Studies in Ethics, Law, and Technology 6 (1).
Afforestation along the Great Wall during the Ming Dynasty.Zhong-lin Qiu - 2007 - Nankai University (Philosophy and Social Sciences) 3:32-42.
The 2016 CIOMS Guidelines and Public-Health Research Ethics.J. R. Williams - 2017 - South African Journal of Bioethics and Law 10 (2):93-95.
The Forest and the Trees.Mark Weinstein - 1992 - Studies in Philosophy and Education 11 (3):285-291.
Forest and Philosophy: Toward an Aesthetics of Wood.Galen A. Johnson - 2007 - Environmental Philosophy 4 (1/2):59-75.
Professionals and the Public: Power or Partnership in Health Research?Lisa Robinson, Julia Newton & Pam Dawson - 2012 - Journal of Evaluation in Clinical Practice 18 (2):276-282.

Analytics

Added to PP index
2018-10-21

Total downloads
8 ( #600,894 of 2,293,884 )

Recent downloads (6 months)
8 ( #62,959 of 2,293,884 )

How can I increase my downloads?

Monthly downloads

My notes

Sign in to use this feature